Thursday, August 30, 2007

Meeting this morning...

I am scheduled to meet Jimmy's new teacher this morning at an early meeting. The timing is horrible as I have so much going on at my school, especially trying to ready a new library for Tuesday. Hopefully it will be brief. I just want everyone to meet everyone else before the first day. I know he has already met the teacher and I have been told they interact well together. Right now, I am debating dragging him along to see for myself, but the reality is that I am trying to foster communication between the adults. Your non-verbal child is never going to tell me how is day is, so I need to feel like I am informed. I don't want another incident like the Rifton Chair.

Monday, August 27, 2007

Lots of stress...

I hate bad drivers, insurance companies, and car salesmen, in that order.

Jimmy had a huge meltdown tonight. I haven't even started the new medication with all of the added car drama, but I am concerned. He didn't want to be in our bedroom, didn't want to be his, cried for a good 40 minutes. I wish I understood what plagued him sometimes.

We have doctor's appointments Wednesday afternoon and I have a transition meeting with the new teachers and the therapist early Thursday morning for Jimmy. I had to ask for it, but it really should be standard. Yes, they have active construction going on and had to cancel "Meet the Teacher" night for parking concerns. But what parent in their right mind would send their non-verbal child to a teacher they have never met? I just can't.

Sunday, August 26, 2007

The death of my car...

It is with great sadness that I announce the death of my 2001 Ford Focus wagon. It was taken from us prematurely by a person who failed to slow for stopped traffic. This is the second time in a month that we have been rear ending in stopped traffic by someone who seemed to be talking on a cell phone at the time of impact. The first one was a $550 repair bill for a slow speed impact in Jim's car when we came back from Texas. This impact was not at a slow speed from what Jim told me. In this case, the driver was cited by Fairfax County Police. My car was pushed into the vehicle in front of it, so there is front and rear damage as well as airbag deployment. I think the bill from this will more than likely total me out. Jim and Jacob were on their way to meet Jim Sr. for a train show at the Dulles Expo. As you can tell from the photo, Jim was hurt - he has a burn from the airbag deployment as well as a sore back and neck. Jacob seems okay, but he is sore as well. He was scared crapless when the airbag deployed. Both went to the emergency room and both will be going to the doctor again this week. It could have been so much worse, though, but it makes me sick that they hurt and had to go through something like this.

Friday, August 24, 2007

Okay, okay

Yes, I am still alive. I have been overwhelmed with life and work, especially some things that are going on on-the-job. But I am still here.

We have a nice visit on the Hill with one of Congressman Wolf's LAs. She knew very little about autism, so for an hour I shared with her my experiences with Jimmy. We had to keep off the Mr. Wolf's desk, so eventually we let him watch TV. He had a very nice flat screen in his office, where Jimmy watched Sagwa and Barney. I asked her several questions about the Combating Autism Act and the money from it. I hope she tracks down an answer, those I know that the wheels on the Hill grind very slowly. It was gratifying to just get time with someone like that.

I couldn't get him not to squint, but at least he looked at the camera.

We have our rescheduled doctor's appointment today for Jimmy. I got a note in the mail confirming the appointment for Rockville. Since I was told that it was definitely Fairfax, I was concerned. So I called the doctor's office. She breathlessly called back to tell me that there was a glitch and that all of the doctor's patients were scheduled into Rockville by mistake and it was indeed Fairfax. I was the only person to pick up on it, so she had to now call all his patients to clarify. My good deed for the day. Apparently, however, Children's Hospital's office manager is Howdy Doody. I have not been in a single department there where the office wasn't a mess.

Wednesday, August 22, 2007

Watch this space...

I owe you a post. I have been so busy with life and work, I haven't gotten a chance to do it. I promise later tonight.

Thursday, August 16, 2007

More Sesame Place pics...

Dancing with SuperGrover...

What can I say... Jacob likes to boogie!!!


We love Zoe!

An interesting article about IQ tests...

...and autistics. Of particular interest to me as I have to get Jimmy tested to get him on the list for DD Waivers.

Mr. Kirkland Goes to Washington

Jimmy and I are taking a little trip in the AM to Congressman Wolf's office to meet his new healthcare staffer and talk about autism. Pics tomorrow...

Wednesday, August 15, 2007

Mandy Moore covers Rihanna

I have a mild cover song obsession, so when I tripped across this, I couldn't resist...

Cookie Monster Gallery

Cookie Monster is worthy of his own post...

As I said in an earlier post, he has a Cookie Monster t-shirt. He still "talks" about it - meaning he smiles and says Cookie Monster repeatedly, so we talk about the day.

Thanks Matt.

A few Sesame Place photos!!!!

Jacob with Elmo...

Jacob using the ropes to pull himself up...

Hi from Elmo!

Jimmy (green swim trunks) sliding down...

Monday, August 13, 2007

This surprised me...

Autism Speaks picked up the article on Jimmy and the bathroom...

Wow!!!! Back home, back to work, back to the world...

First off, to finish up the vacation stories. When we returned to Sesame Place on Sunday, I went back to the Welcome Center to get Jimmy's wristband. When I arrived there, I gave the woman working the desk Jimmy's name. She told me she had seen my blog... she was Zoe's mom. We talked for a few minutes - now we know why her daughter was so wonderful and sweet! Clearly genetics! As souveniers, I bought a little stuffed Zoe of my office - I was really touched by the whole experience of meeting Heather (if you are reading, I would love to keep in touch!!!) and I got Jimmy a Cookie Monster shirt. He loves it. We had a wonderful day - we left about 2pm and swung out to Hershey to see Chocolate World. It had been our intention to go to the park for a few hours during their twilight prices, but it was really more than I could do. But the tour was fun!

We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.

But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.

The photos are on the upstairs computer, so I will post those later.

Saturday, August 11, 2007

Day 2 of Sesame Place and a side trip to Chocolate World...

More on this tomorrow, as I have to get some overly excited boys down for the night. Suffices to say that today was amazing as well!!!

Friday, August 10, 2007

Greetings from Sesame Place... and special greetings to Zoe and Cookie

I will update with a ton of photos when I get home, but we are at Sesame Place, our last blast before I head back to school to ready the new library on Monday. We went all out this time, including the Dine With Me character lunch for the boys. They loved it, especially Jimmy. But that would be an understatement of what really happened...

The moment we walked in, Jimmy said "Cookie Monster" in his tiny little voice. We knew that we had to be sure that Jimmy got a minute with Cookie. The characters all floated around the room - it was a great experience. At times Jimmy found it a little overwhelming, but he really enjoyed his visits with Ernie and Zoe. Actually, Zoe hung out for a while. I always tell the characters about Jimmy - it often makes a difference in their approach to him - and Zoe took a lot of time. I was babbling on about him and Zoe pointed at me and then made muscles with her arms. "Your strong." I was so touched. So I told her about him and my other kids at my school and she actually pointed at herself, crossing her arms, and then point at me. "I love you." Eventually she said goodbye to the boys and moved on, but Zoe was just so sweet.

Jimmy told the character handler of Jimmy's desire to see Cookie Monster - he had to, because Cookie had been hanging out on the other side of the room. Right after he finished his song, he cruised over to our table. Up until this point, Jimmy greeted the characters warily at first. When Cookie Monster arrives, he smiled a bit. He was excited to see him. Cookie hung out for a few minutes too. We told him about Jimmy saying his name when he arrived, that Jimmy loved Cookie Monster on Sesame Street, even that the first time I realized Jimmy understood spoken language was when Jimmy laughed at one of Cookie Monsters jokes on the show.

It was such a great experience, I could not have imagined it getting any better. But it did. As we were walking over to the big play area to let them run around, three college aged kids were coming my direction. This very petite and pretty girl walked up to me and started with "You don't know me..." It was Zoe out of costume. She told me that I was amazing and just kind of told me what she was trying to express to me when we were at the event, when she couldn't talk. Then the guy with her spoke - he was Cookie Monster. He said was very touched that Jimmy was so pleased to see him. I am just sorry that Jimmy wasn't with me. He had gone ahead to the playground. I told them about the blog, so I am hoping they will visit. I don't think I told them enough how amazing they made our day.

Tuesday, August 07, 2007

Two pics of Jimmy that are sort of amazing...

We flew American Eagle from Nashville to National on a small jet. There were two seats on one side of the aisle and one on the other. It was a configuration that simply wasn't going to work for takeoff. Fortunately, there was an amazing compassionate family who let Jacob sit next to them during takeoff so I could focus on getting Jimmy settled. Actually, he did amazing well during take off... no meltdowns or anything. We were seated however in the back of the aircraft. The noise was so unbearable, he went half the flight with his fingers in his ears.

Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.

He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.

He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.

I am so proud of my boy.

We are back...

After Jimmy's recovering and another day in the pool at my dad's, we are back from Texas. We made our arrival in dramatic fashion as our bags went to Dulles, we went to National, and then we were rear ended on 28 on our way home. Don't worry, we are all okay. Such drama for six days away. I hope our weekend trip away is less eventful.

So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...

Jacob eating ice cream at Braum's on Sunday.

My dad's Braum's selection.

To my left...

and my right on the flight from DFW to Nashville on the way home...

Read this...

From the opinion's page on the Manassas Journal-Messenger...

Saturday, August 04, 2007

Pimp My Ride

Best. Cart. Ever. For a dollar, your kids can ride around in a character themed cart that plays videos. Why don't they have these in our Wal-marts at home?

CareNow cares not...

I took Jimmy to see a doctor today at an urgent care place called CareNow in Denton. It is a misnomer.

When I checked in, I let the nurse know that Jimmy was autistic and could be difficult in addition to all his other symptoms - fever, throwing up, etc... When we saw the doctor, I asked if he had gotten the heads up. He said yes, but that "this is an urgent care facility and we don't have time..." and then trailed off. We don't have time for kids like yours. Patients with special needs. He didn't finish, but you can tell from the start that it was going nowhere good. Those words should never have been formed in his brain. I told him until developmental pediatricians open up their own urgent care facilities, that kids like my son would need medical care when they are sick and come.

I gutted it through because my kid was sick and needed a doctor, but there was so much more I wanted to say. I was angry, insulted, crushed. I felt like he didn't want to take care of my son because he wasn't normal. And my son was sick. Like he didn't deserve care. I know more than likely, what he was thinking was that I have to crank through these patients, I don't have time for checking this combative kid out. But that's not what I heard and it certainly doesn't excuse his rudeness and thoughtlessness.

A doctor doesn't get to pick his patients. Certainly not in an urgent center. Unless CareNow has a policy of not providing medical care for people with disabilities. I didn't see one posted on the door. I filled out and mailed a comment card after the appointment, but I will be writing and calling the home office this week as well (apparently this place is a chain.) I will see to it that no CareNow patient with a disability is treated so rudely again.

Jimmy has strep. They gave him a shot of antibiotics. I am hoping he will be fever free in the morning.

No trip to Texas is complete...

...without a visit to the ER. That's where Jimmy will be headed in the morning. He is still feverish. I am betting ears - it seems to happen every time we fly.

Friday, August 03, 2007

Day three

Jimmy is still sick. He had a brief burst of energy this morning and went back into the pool, but he is asleep as is Jacob, who has had a busy couple of days playing in the pool with his cousin Katie and with the various animals around here.

Thursday, August 02, 2007

From Jimmy's birthday party...

Never a dull moment...

Jimmy has thrown up four times and Sarah picked up lice from a playmate, so we are treating his new BFF Jacob right now. I just need to pick up Jimmy's bug or Sarah's bugs to make my trip complete.

Greetings from my vacation.

Jimmy makes the news again...

Check it out... the reporter that took over for Alex Granados (who got a richly deserved promotion) is Kipp Hanley. He wrote a very nice article about Walmart's new toilet.

Greetings from Denton, Texas

I wrote this on the way here yesterday, so I thought I would post it and then give the context...

"Well, that was a little slice of heaven! We tried to get on a 6:05am
flight to Dallas and didn't make it off stand by. With prospects
bleak over there,we headed to National. Our flight turned doubtful
before we ever arrived. So now we are on a flight to Nashville."

Since my niece was returning to Texas, I decided to go with her. An extra set of hands would be helpful, right? They were, but, wow, what a day!

I got a nice night's sleep of less than 3 hours, before setting off to the airport. We arrived at 4:30 for a 6:05 flight. Since we were flying standby, we knew there was a chance that we wouldn't make it. We didn't. Since prospects were bleak for the rest of the day at Dulles, we got listed for a flight at National. By the time I spend $51 for the four of us to hop the SuperShuttle and we arrived, that flight was not promising either. My brother-in-law told us there were 20 seats available to Nashville and 24 from Nashville to DFW, we ran to make a Music City flight. We finally arrived here at about 1pm. My stepmom came home for her quilting group so I could take a nap. I feel better today.

Of course, there is more to the story, but it will have to wait. I think the kids should be waking up shortly. Speaking of sleep, I do have a photo to share from the flight - the last five minutes with Jacob. That was the only sleep achieved by any of us during the flight.